ME since 1982 #longhaulers #longcovid

Bad ME since November 1982. Symptoms fluctuated but entire life ruined. Now #longcovid endurers have similar problems. Unite!
Much swearing when frustrated!

[ME since 1982 #longhaulers #longcovid @me_1982]

38 years of loss. No children because I couldn't have provided the basics of care for them. A career I loved gone. Years of fighting for the right to be clean, fed, watered. Years of being laughed at by carers, medics. Years of trying every treatment possible.
#MEAwarenessHour

[ME since 1982 #longhaulers #longcovid @me_1982]

@TheSunTV Rachel Riley seems to be able to argue with anyone. Her legal pursuit of journalist Mike Sivier has been disgraceful.

[ME since 1982 #longhaulers #longcovid @me_1982]

@NickHarrisin10 @CaroleBruce17 @Tesco Nick, I've found Tesco and Asda drivers great where I live. Willing to help as it's hell for me struggling on my own
Am very grateful to you lads and lasses.

[ME since 1982 #longhaulers #longcovid @me_1982]

@KTKINGbooks @Specsavers Plus I had one of @Specsavers workers turn up out the blue, come into my bedroom (my professional carer presumed it was a booked appt) huff & puff when I said I hadn't been treated properly. I couldn't raise my head off the pillow or see properly as she bunged a pair on my nose

[ME since 1982 #longhaulers #longcovid @me_1982]

1. As the days get brighter I'm left with no prescription glasses that have darkened lenses for my photophobia. I used them for a home visit. Gave them £139 for 1 pair of glasses + £25 for the home visit. They didn't tell me I was entitled to a 2nd pair up to that price. Cont...

[ME since 1982 #longhaulers #longcovid @me_1982]

@KTKINGbooks I had to do that complex lens thing a few years back...thankfully it's changed again, but was nearly £400 at the time. I know it's not funny.
My problem is @Specsavers supplying an in-home service and charging extra while not giving people the advertised service.

[ME since 1982 #longhaulers #longcovid @me_1982]

It's irrelevant what the test says, it's how someone is affected. So many people with cancer have died unnecessarily or prematurely because their treatment or operations were stopped due to covid. THAT'S human consequences.

[ME since 1982 #longhaulers #longcovid @me_1982]

Delusional on all counts. Lol.

[Sir Michael Take CBE @MichaelTakeMP]

In Liz Truss we have the fighting lioness.
In Nadine Dorries we have the astute intellectual.
But in Priti Patel we have someone quite different:
Tender
Reaching out
For Ukrainian refugees she is their Mother Teresa.♥️
Priti is fast becoming a beloved treasure in this country
🇬🇧

[ME since 1982 #longhaulers #longcovid @me_1982]

This is horrible but it's how it's been for decades for #pwME. We were infected again and again and so few cared. Our society is reaping what it sowed - leaving millions to suffer and prematurely died over generations. Where were the voices?

[ME since 1982 #longhaulers #longcovid @me_1982]

@Specsavers just turn up on disabled people's doorsteps with no warning or appointment. They have no concept about the needs of vulnerable people. #disabled

[ME since 1982 #longhaulers #longcovid @me_1982]

3. When this first started I officially complained to @Specsavers but they brushed it all under the carpet and no guarantee of any strategies to help them serve disabled people.

[Caroline D 🕊️🍉 @MarshWonderer]

Such a difficult day; my beloved dog died suddenly and unexpectedly yesterday and I received news from the DWP that I had been stripped of PIP completely.

But the universe gifted me the sight of three kingfishers, a red kite, two sandmartens and so many butterflies🙏💖

[ME since 1982 #longhaulers #longcovid @me_1982]

@did_40 On a plus side you look as cute as a button. Lol. I hope your body thermostat is working better right now.

[ME since 1982 #longhaulers #longcovid @me_1982]

Haha! John certainly got that right! X

[John K @j_b_kennedy]

After 15 months of #longcovid this protocol has worked wonders for me 😂😂

[ME since 1982 #longhaulers #longcovid @me_1982]

The Banal Heaviness of Being for so many #LongCovid sufferers. As someone with #MyalgicEncephalomyelitis I was advised by a counsellor to have a family pic by my bed to get me out of paralyses.Then they viewed the event for themselves. They apologised for their facile suggestions

[Dr Asad Khan FRCP FRACP 🇵🇸🇳🇿🇮🇳#pwLC @doctorasadkhan]

#LongCovid patients please do not enrol in this study. If you have done so, withdraw. This is a misuse of valuable research money that would have been better spent on #microclot detection & trials of anticoagulants.

[ME since 1982 #longhaulers #longcovid @me_1982]

@_memyselfandwhy I died but god forgot to tell me.

[Lucy 🐾 @WildlifeLucy]

Forgive me #ME for I have exerted. The sunshine and the butterflies were too tempting and I found myself feeding the clematis... 🫣😬
#AlreadyPayingForIt😵‍💫#pwME